Feeding Tube Awareness Week was first created by the Feeding Tube Awareness Foundation, a non-profit organization in the USA, to increase awareness of feeding tubes and enteral feeding. The 12th annual Feeding Tube Awareness Week will be celebrated 6-12 February 2022.
In Australia, Feeding Tube Awareness Week is an awareness raising campaign of ausEE Inc., a registered Australian charity and peak national support and advocacy organisation for people living with an Eosinophilic Gastrointestinal Disorder (EGID).
They aim to increase awareness and understanding of the challenges and impacts that day-to-day tube feeding has on individuals, carers and families. This week aims to bring everyone together who has a feeding tube, whatever the reason may be. You can watch an animated 1-minute video on the awareness week and feeding tubes here: Feeding Tube Awareness Week
Feeding tubes & MND
MND causes your voluntary muscles to weaken over time, and this can include the muscles involved with chewing and swallowing. This muscle weakness may cause you to cough during mealtimes, take a longer time to eat, cause some anxiety when eating and drinking or you may eat, and drink less than you usually would. This may cause weight loss, malnutrition, dehydration, aspiration pneumonia and have an impact on your quality of life.
Percutaneous endoscopic gastrostomy (PEG) is a procedure that involves inserting a tube through the abdominal wall and into the stomach. Gastrostomy is a way of providing fluids, nutrition and medication directly into your stomach and bypassing your mouth and throat. This small fixed tube leads into your stomach, so you can directly add nutrition, and this is also known as enteral feeding.
If you have lost weight or are often dehydrated, enteral feeding can help maintain your weight, improve your hydration and help to reduce tiredness and hunger. You can still eat and drink after having the tube fitted, if it is safe to do so, but the tube ensures you are getting enough nourishment. This is a very individual decision and your treating health professionals can provide you with more information and support for your personal circumstances.
myMND is a collection of educational resources for people living with MND/ALS developed in collaboration with the MNDA (UK association) and the University of Sheffield. This site has information and videos that show what interventions such as PEG and NIV are like for people with MND. myMND
MND Decision Tools is an Australian website developed to assist people with MND to make decisions for their care and quality of life, particularly when the decision is hard to make, or there is no clear answer. Each decision tool explains the advantages and disadvantages related to the decision and guides you to consider your personal feelings about each choice. mnddecisiontools.com
Also see these factsheets:
- MND NSW Considering gastrostomy - PEG and RIG (EB8)
- MND Connect Eating, drinking & swallowing | MND Australia
- MND Association of England, Wales and NI Tube feeding (mndassociation.org)
- myTube (PEG) supports people to make choices around nutrition support and feeding tubes in MND/ALS - myTube (mymnd.org.uk)
- ALS Foundation video (USA) 2017 - Living with a Feeding (PEG) Tube - YouTube
- Professor Vicki Flood’s presentation on the effectiveness of swallowing exercises and dietary modifications for people living with MND - MND NSW - Ask the Experts 2020 - YouTube
- Amal Owaimrin - Senior Dietitian Nutrition and Dietetics, St Joseph’s Hospital, Living Well with MND day at Ryde on 22 October 2019. Amal presents on Strategies for Maintaining Nutrition in MND. She talks about weight loss and MND, constipation, swallowing difficulties, reduced hand function, loss of appetite, 2019 LWWMND - Strategies for maintaining nutrition - Amal Owaimrin - YouTube
Free printable stories and colouring pages on pump feeding and gastrostomy/PEG/tube feeding produced by Nutricia
- Cameron_Camel_pump-ANZ.pdf (tubefeeding.com.au)
- Billy_Bear_Button_gastrostomy-ANZ.pdf (tubefeeding.com.au)
Awareness Critters on Etsy
Low cost colouring pages for children for awareness of PEG’s and other disability aids.
- PEG tube - Awareness Critters Tubie Bolus Coloring Page | Etsy
- AFO's/orthoses - Awareness Critters Mythological Critters Coloring Page | Etsy